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Problems after MVD operation for TN - any advice plse?

Posted , 14 users are following.

jill55165
jill55165

I had MVD mid June this year, I am still struggling with numbness to tongue, gum and mouth on the left side where operation was performed behind my ear.  Just a few weeks after operation possibly due to biting tongue and lip have now got Burning mouth syndrome, consultant told me to see a dentist!  I am now waiting to see oral surgeon to see if he can help.  I still have a painful skull and struggle with sleep as my scar is still sensitive and have pressure around that area as well as inside of ear.  The facial TN pain has gone however getting waves of tingling on my face - has anyone else experienced this if so can you advise?  Consultant said as the nerve wasnt cut it should get a bit better, however the numbness is the price you pay for not having TN pain!

2 likes, 27 replies

27 Replies

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  • colin04561
    colin04561 jill55165

    Posted

    Hey Jill,

    I'm going through old discussions and checking up on everyone. How are you doing?

  • christine96933
    christine96933 jill55165

    Posted

    Dear Jill,

    I am 3 weeks post surgery and i also have full facial numbness but i also feel as if my tongue is swollen on tn surgery side. Do you feel that way or maybe someone else out here in MVD world

    Thanks

  • susan711
    susan711 jill55165

    Posted

    I had my mvd in February 2017. I still have facial numbness which I am finding quite hard to cope with. While immensely grateful to be pain free the numbness affects my eating and drinking, as some food /drink escapes down my front. Talking also makes it much worse, and it affects around my eye as well. I can't see it ever getting any better after 2 years so I have to live with it. But knowing what I know now, I would still have gone ahead with the surgery. The TN was out of control and the side effects from the medication were just awful.

  • army183
    army183 jill55165

    Posted

    HI Susan and Jill

    Just caught up with this chain and saw your update from only a few hours ago!

    Very sad to hear of your collateral neuromuscular problems and i really feel for you with your difficulties re eating/drinking and the other trigger effects you describe. As you say, at least youre relieved to be away from the appalling TN pain and accompanying drug side effects. I consider myself very lucky to have had a successful MVD in 2017 and uneventful recovery and smooth weaning off my mega-doses of Carbamazepine .

    This doesnt help you of course, but i felt i had to drop a note to this topic to say that i am sorry not everything went OK for you, but to wish you every good wishes for your progress and maintenance of your pain/free from that dreadful TN.

    Keep safe

    Big D

    • susan711
      susan711 army183

      Posted

      Thank you. I really wanted to say that, despite current difficulties, I don't regret my decision and would make the same choice again, knowing what I know now. Your message reinforces the point that mvd can be the best decision. Each of us is different and may have varying outcomes, but if it relieves an intolerable condition it can be worth it.

  • christine61383
    christine61383 jill55165

    Posted

    Jill

    I had MVD surgery July 25, 2018... i still have complete facial numbness on surgery side, feels like teeth, gums, tongue is swollen, and yes have the facial burning..i continue to get migraines tho not as bad as before but they put my on amioviq. Weather definitly effects me. i take lirica for the facial pain & numbness pressure which does not take it away but does take the edge off.

    I have come to grips with the fact i will never get the feeling back and that i have swapped out wanting to kill myself bc of TN pain for never being able to taste, or ever feel the same again.

    Im sorry i wish i had better news but...just hang in there. I feel your pain❤

  • mary32217
    mary32217 jill55165

    Posted

    Hi Jill

    sorry to hear your story ..

    Hold on ..

    I can say that some of my numbness is,gone and Im able to fell some on that side..

    keep the faith..

    Im 2 years in..

    Trust God.

    blessings to you...

    love Mary

    good night.

  • tamasia1980
    tamasia1980 jill55165

    Posted

    Hi all I hope this finds you all doing better than you were three years ago. how is the burning mouth syndrome going for everyone now? i had mvd 4 mouths ago, the mouth is getting so much worse . i cant help but always taste metallic now and when my tongue hits my teeth it gets so much worse. I have learned to deal with all the numb in the face. But this mouth I want to get off. im also experiencing major swelling all of the sudden on the side of the scar closer to the ear, anyone else get this out of no where?

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